National Ataxia Foundation Center of Excellence – Ataxia Specialty Clinic

The UNC Department of Neurology has been actively caring for patients with Ataxia since the opening of NC Memorial Hospital in 1952. Currently we have specialists who are trained in the treatment and management of those with Ataxia.

At UNC a specialty interdisciplinary clinic is offered for those with ataxia. This is a 4–5-hour appointment where a team of clinicians creates an individualized plan of care. At the Ataxia Specialty Clinic, you will be seen by physical therapy, pelvic floor therapist, speech therapy, occupational therapy and a movement disorders specialist.

As a National Ataxia Foundation Center of Excellence, we uphold a mission to ensure high quality care, outreach, and research for those impacted by ataxia.

Roadmap for the Ataxia Journey

What is ataxia?

The term ataxia comes from Latin and means “without order”. Ataxia is a neurological condition that affects coordination, balance, and speech. Individuals with ataxia may experience clumsiness, difficulty walking, challenges with speaking clearly, or trouble performing everyday activities. There are many different types and causes of ataxia, and symptoms can vary widely from person to person.

Living with Symptoms

Physical Therapy and regular exercise play an important role for people living with neurological conditions. Exercise can help slow progression, maintain mobility, and support overall function. Physical therapists with specialized neurologic training focus on exercises that improve balance, strength, and mobility. During these visits assistive devices such as walkers or wheelchairs may be discussed and trialed when appropriate. Because ataxia increases fall risk, preventing falls is a key part of care. At UNC, our physical therapists are specially trained in the use of balance-wear vests, which may provide additional support for mobility and stability. See below to view our rehab specialists.

Occupational Therapy focuses on activities that make up daily living. If ataxia affects tasks such as eating, dressing, or toileting, a neurologically trained occupational therapist can provide strategies and adaptive tools to support independence. Occupational therapists can also help when tremor or coordination difficulties interfere with everyday activities.

Speech Therapy can play an important role in managing symptoms related to ataxia and other neurologic conditions. Speech therapists can help address changes in speech clarity, swallowing safety, and cognitive-communication challenges. Therapy may include strategies to improve communication, exercises to support safe swallowing, and techniques to assist with attention, memory, or problem-solving when needed. Because ataxia increases dysphagia and aspiration risk, safe swallowing is a key part of care.

Pelvic Floor Therapy may be helpful for individuals experiencing bladder, bowel, or pelvic floor dysfunction related to neurologic disease. Specially trained therapists can provide targeted exercises, education, and strategies to improve continence, comfort, and quality of life.

If recommended, we refer to Dr. Kristy M. Borawski who is a urologist with specialization in neurourology, voiding dysfunction, and neurogenic bladder.

Swallow Clinic at UNC: For patients with concerns about swallowing, the UNC Swallowing Clinic offers comprehensive evaluation and treatment by a multidisciplinary team with expertise in neurologic conditions.

Support & Education

Support and Education are essential components of living with ataxia. Connecting with others who share similar experiences can provide emotional support, practical guidance, and a sense of community for both individuals with ataxia and their care partners.

Within North Carolina, there are currently two ataxia support groups that offer opportunities for peer connection, education, and shared experiences.

In addition, The National Ataxia Foundation maintains a directory of support groups across the country. You may find additional resources by visiting: Support Groups – National Ataxia Foundation.

Care partners also play a vital role and often benefit from dedicated support and education. The National Ataxia Foundation offers specific resources, guidance, and support opportunities tailored for care partners, which can be found at: Care Partners – National Ataxia Foundation.

For individuals seeking educational resources, tools for daily living, and opportunities to connect with the broader ataxia community, the Ataxia Connection provides helpful information at: Living With Ataxia – Ataxia Connection.

Ongoing clinical research is actively exploring treatments and interventions for various forms of ataxia. If you are interested in learning more about current or upcoming clinical trials, additional information is available through: Home | ClinicalTrials.gov.

The National Ataxia Foundation also provides updates and educational materials related to ataxia research and clinical trials.

Ataxia Specialists

Rehabilitation Specialists for Ataxia Specialty Clinic

Patient Advisory Council

Patient Appointments & Referral

UNC offers a comprehensive, interdisciplinary clinic dedicated to the evaluation and management of individuals with ataxia. The Ataxia Specialty Clinic brings together a specialized team that includes physical therapy, speech therapy, occupational therapy, pelvic floor therapy, and a movement disorders specialist.

Many individuals with ataxia have not previously been evaluated by clinicians who specialize in this condition or may be uncertain about the specific type of ataxia they have. The Ataxia Specialty Clinic focuses on comprehensive assessment, diagnosis when appropriate, and individualized recommendations to support care and management.

Clinic Schedule & Evaluation Process

The clinic is typically held on the first and fourth Fridays of each month. On the scheduled evaluation day, patients will attend the UNC Outpatient Rehabilitation Clinic and should plan to be present for the entire morning. At the conclusion of the visit, patients will receive a packet of general information and resources.

Following the evaluation, the interdisciplinary team meets to review findings and develop coordinated recommendations. A written summary of the team’s assessment and recommendations will be mailed to the patient within 3–4 weeks of the appointment.

Referral Requirements

Appointments require a referral from a neurologist or primary care provider (PCP) using the referral form provided below. To qualify for the Ataxia Specialty Clinic, there must be supporting evidence of:

• Imaging demonstrating cerebellar degeneration
• A positive family history of a genetic ataxia
• Positive genetic testing

Referring Providers

Physicians wishing to refer a patient should complete the referral form and fax it, along with demographic information, insurance details, and recent neurology or relevant clinic note, to:

Fax: (984) 974-2285

Attention: Jessica Rider

Questions

For additional information about the Ataxia Specialty Clinic, please contact the Center Coordinator: Latorius Adams at (919) 962-2900

Patients should ask their provider to refer them directly to the Ataxia Specialty Clinic.

• Providers who have access to UNC CareLink can submit a referral online. If you would like to enroll, click on the link and select “Request an Account.” You may wish to download an overview of the referral portal or view a step-by-step guide on how to sign up.
• If you don’t have a UNC CareLink account, please fax a completed UNC Hospitals Ataxia Specialty Clinic Referral Form, including a specific referral question and records to (984) 974-2285. Please call (984) 974-4401 if you have any questions.

For more information on the referral process, please visit the Referring Provider Resources page.